"Life has meaning only in the struggle. Triumph or defeat is in the hands of the Gods... So let us celebrate the struggle!" -Swahili Warrior Song

Saturday, October 31, 2009

Halloween!

Today I'm in a better mood. Not quite as angry. Somehow blogging helps me clear my head and remember what's important, which is staying focused on Noah and being positive.

Sometimes I just need a blogger meltdown to get me to the "right" head space.

Tonight we are sitting here doing the same 'ol same 'ol (feeds and spitting up with a seizure in between). There are kids (well, GERMS with costumes on disguising their H1N1 viruses) coming to our porch to find a big bowl of candy and a sign: "Sorry we missed you. Happy Halloween. Please just take one! :)" I'm such a chicken and I'm doing my best to keep Noah healthy this cold and flu season!

So here are a few pics of Noah and Daddy all dressed up...

Noah is "Tom Brady-cardia" (He used to drop his heart rate to the 40 and 50s beats per minute when we were in the NICU which caused many many alarms to go crazy (and his mom went a little nuts too!)). Next year I think he'll be "Seizure" Salad. Have a Happy Halloween!

3 comments:

So glad you guys had some laughs this weekend. Definately - blogging and dealing w/ so many emotions head-on is a good thing. Mostly - you pull through those moments and still have your sense of humor. Very important. I love you! Cindy

Ok, nice costume Todd. That's a classic. And Noah is putting them all to shame he looks so tough. hang in there girl. You are fighting the hard fight and don't blame yourself for wanting to keep Noah from catching germs. They scare me too. Love you

Noah and Mommy

Our Story

Noah was diagnosed with a sacrococcygeal teratoma at our 20 week sonogram. We had no idea what that meant and thanks to google we quickly learned WAY too much about them. It's a tumor originating from the tailbone. One referral turned into another and in a whirlwind we found ourselves in Philadelphia at Children's Hospital. After a day of tests we met with an amazing surgeon who recommended we stay there and let them monitor our son and his tumor. We flew back to KS, packed our car, grabbed our dog, and moved to Philly.

Twenty-seven weeks into my pregnancy Noah's tumor had increased in size, had a very rich blood supply, and started to put him into heart failure. They decided to deliver Noah to save his life. They saved him indeed. We spent the next 88 days in the NICU. We got there at 7 am and left at 11 pm everyday. We watched him undergo two more surgeries to remove the rest of the tumor including a part which had migrated into his spinal canal. We watched him intubated, CPAP'd, brady (all the time!), live in an incubator, grow, get blood transfusions, have multiple IVs, and so many other things you just never want your child to endure. He fought every step of the way like a champ (he is much stronger than I) and finally we were discharged! Life started for us. We moved to a new town, met new people, watched Noah thrive. He started getting PT and OT to help him catch up (he was three months early therefore three months behind when referring to his development and milestones). We found out he had a hearing impairment and CVI, but he is so strong. His feet don't move but his legs do. This summer he started having seizures. He was diagnosed with Infantile Spasms. It's a form of epilepsy which is considered catastrophic. I believe it. This is a story of our battle. This will be a story of triumph.